Donor Heart Allocation for Foreign Nationals: NOTTO Rules

Donor heart allocation for foreign nationals in India rests on one rule: a foreign patient is offered a heart only after every Indian hospital has declined it. The patient is listed with NOTTO, the national organ body, and waits a median of about a year. Body size, blood group and the hospital's own donor programme decide how fast a heart comes.

This article sets out the allocation rules as Dr. Biswarup Purkayastha, Consultant – Heart & Lung Transplant and Vascular Surgery, Artemis Hospitals, Gurugram, India, explained them to referring doctors in Africa, together with the matching criteria, the realities of the wait and the costs he gave. For the overall pathway, see the complete guide to heart transplant in India for foreign nationals.

How organ allocation works: NOTTO, ROTTOs and SOTTOs

India allocates deceased donor organs through a three-tier network:

• NOTTO, the National Organ and Tissue Transplant Organisation, is the national body. Every foreign national awaiting an organ is listed here.
• Five ROTTOs, Regional Organ and Tissue Transplant Organisations, cover the north, south, east, west and north-east of the country.
• State organisations (State Organ and Tissue Transplant Organisations, or SOTTOs) coordinate donation and allocation within each state.

The geography is the first constraint. The network has to move a heart across a very large country within the four to six hours that thoracic organs tolerate outside the body. In Dr. Purkayastha's assessment, the regional organisations in the north, south and west are the active ones; the eastern and north-eastern organisations are less active.

Why foreign nationals are offered donor hearts last

Indian law gives Indian citizens priority for every donor organ, and the country itself faces a shortage of organs. In practice, a foreign national is eligible for a heart only when the organ has been refused by every other hospital in the country, for size, shape, blood group or any other mismatch. Only then is it routed to a foreign recipient.

Dr. Purkayastha was candid about how the rule evolved. Allocation was initially more purely clinical, directing organs to the patients who needed them most, and the practice attracted some difficult press. Under the current system, a heart reaches a foreign national only at the end of every check and balance, which takes six to seven hours at the least. By that point the organ's reliability is a genuine challenge, because the usable window is close to exhausted.

The in-hospital exception to the allocation rules

The rules change when the donor and the foreign recipient are in the same hospital. Dr. Purkayastha described how it works:

1. A hospital offers an organ from one of its own donors to the national network.
2. If the state organisation, which covers the hospitals within roughly a 150 km radius, refuses the organ, or nobody from the region is able to come and procure it, the hospital's own in-patient moves to the top of the priority.
3. The hospital does not need a no-objection certificate (NOC) from every regional organisation. It informs NOTTO that the organ has been declined by the state body and that a foreign national in-patient is waiting.
4. The foreign national then becomes a candidate to receive that organ.

He called it a strange rule, but that is how it works. The contrast with an organ offered elsewhere is stark. If the donor is at another hospital, the offer has to pass through NOTTO and every regional organisation, each of which must issue a no-objection certificate, and by the time the last region has responded the organ is often lost.

The practical consequence for a foreign patient is that the hospital's own donation activity matters as much as the national list. Dr. Purkayastha's team promotes in-hospital donation in its trauma and neurology units. When a family faces an end-of-life coma or brain death, grief counsellors, intensive care nurses and intensive care specialists talk to them about donation as an altruistic way of letting a life continue. He sees their role as central to the whole system.

Donor heart matching: what decides how fast a heart comes

Nobody can promise a foreign patient a heart, and Dr. Purkayastha does not. What he can describe is the set of factors that move the odds.

Body size

A donor heart must fit the recipient. International guidance accepts a donor weighing at least 70% of the recipient's weight in most cases, and teams increasingly match on predicted heart mass; Dr. Purkayastha's team prefers a donor body surface area within about 10% of the recipient's, larger or smaller, or a height within about 10 cm. He described the typical Indian build as 160 to 180 cm and 70 to 90 kg. Many foreign patients have a very different body habitus, so when an organ is offered to them it is often a large size mismatch. For a tall or heavily built patient, size is frequently the decisive constraint.

Blood group

Blood group compatibility comes first in any match. A recipient with blood group AB can accept a heart from a donor of any ABO group, so such patients are matched faster than recipients who can accept only one or two donor groups.

The transplant team's reach

A team present in several regions sees offers from several regional organisations. Dr. Purkayastha's team operates out of KIMS Hospitals in Hyderabad, Artemis Hospitals in Delhi NCR, KD Hospital in Ahmedabad, Sir H. N. Reliance Foundation Hospital in Mumbai, and Aster and KIMS hospitals in Bengaluru, which gives it direct access to the three active regional organisations. Organ preservation extends that reach further. The team uses hypothermic oxygenated perfusion, which keeps the donor organ cool and oxygenated during transport and, in his account, extends its usable life from about four hours of static cold storage to 8 to 10 hours. A longer window means organs from further away become usable.

Getting through the wait: ECMO and LVAD support

The median wait for a heart for a foreign national is about a year. The longest Dr. Purkayastha has seen is 12 to 14 months. Of the 20 to 25 foreign heart patients his team has handled over five or six years, he recalls only two who did not receive a heart: one was converted to a ventricular assist device and one went home without a transplant. Most received their heart towards the end of their window.

A patient on the list is already medically fragile, and a year is long enough for the condition to worsen. Dr. Purkayastha's answer is a stepped plan:

• Temporary support. If the patient deteriorates, temporary veno-arterial ECMO, a machine that pumps and oxygenates blood outside the body, stabilises the circulation. One of his foreign patients spent about six weeks on a temporary short-term circulatory support device before a heart came.
• Reassessment for an LVAD. A deteriorating patient is reassessed for a left ventricular assist device. A patient on an LVAD who wanted a transplant and did not get one is, in his words, almost unreal, because the device lets a patient wait for years.

How LVADs work, and who qualifies, is covered in LVAD as a bridge to transplant: candidacy, devices and referral.

Living abroad during the wait

The wait has a socioeconomic dimension that families must plan for. The patient and at least one family member have to live in a different country for months, with very different food. Much of northern and western India is vegetarian, which can be a real adjustment. Dr. Purkayastha noted that the situation today is probably a lot better than it was five or six years ago.

Budgeting for the transplant and the wait

The cost of a heart transplant for a foreign national comes in two parts, as Dr. Purkayastha gave them.

The transplant. For a foreign national, with all the additional legal requirements, he put the cost of the heart transplant at a little under $50,000. He cited the Artemis package as $45,000 for the transplant and $5,500 for the pre-transplant workup.

The waiting period. A foreign patient with heart failure staying in India while listed typically visits the hospital once a fortnight for review. He estimated hospital and medication costs over a 12 to 14 month wait at about $20,000.

Travel, accommodation and living costs for the family come on top of both figures. A patient who needs an LVAD while waiting faces the separate cost of the device, discussed in the LVAD article.

What this means for a referring doctor

Three practical points follow from Dr. Purkayastha's account. First, refer early: a patient who arrives in reasonable condition can wait out a year, while one who arrives with an ejection fraction of 5 to 10% may not survive long enough for any option. Second, choose a centre with in-house donation activity and a multi-regional network, because both improve the chance of a timely offer. Third, prepare the family for the full cost and duration of the stay, not only the operation.

The questions doctors raised during the session, on organ availability, waiting times and costs, are answered in the Live Discussion.